Welcome to the OI family!
The Osteogenesis Imperfecta Foundation is pleased to offer Navigating a New Diagnosis: A Tool Kit for Parents and Medical Professionals to help you navigate the many questions you may have during this exciting, but sometimes stressful, time.
At the OI Foundation, our mission is to improve the quality of life for those living with osteogenesis imperfecta through research, education, awareness, and mutual support. We hope you find this tool kit a helpful resource. Through this tool kit and our online resources, the OI Foundation provides the most up-to-date information possible, whether you are building your prenatal and pediatric care teams, navigating the neonatal intensive care unit, or looking for information on what to expect when you take your baby home. We have also included a section that can be given to your physician if they are not familiar with osteogenesis imperfecta.
Click here to access a pdf version of the toolkit.
The OI Foundation is a resource for you and your child as he or she grows. We have built a website you can trust with medically verified information. We also encourage you to connect with others living with OI for support. Through our social media channels or in-person at our regional and national conferences. Lastly, we can provide information on physicians in your area that have experience working with people with OI.
To connect with the OIF Health Educator or request a print version of the toolkit, please contact bonelink@oif.org or call 301-947-0083.
Cómo abordar un nuevo diagnóstico
Conjunto de herramientas para familias y profesionales de la medicina
This toolkit is also available in French, thanks to the generous support of the Canadian OI Society.
S’ORIENTER DANS UN NOUVEAU DIAGNOSTIC
Un guide pour les parents et les professionnels de la sante
Additional Video Resources
Click the buttons below to watch recorded conference sessions.
English
Español
Française
Video Resources for Medical Professionals
Click the buttons below to watch previously recorded meetings.
Thank You and Dedications
This toolkit is dedicated to the memory of Michael David Johnston (06/20/1955-11/12/2018). When his daughter Emma was born with type IV OI, he and his wife Bonnie suddenly found themselves faced with a lot of new information and uncertainty. While the OIF helped them immeasurably along their journey with OI, this resource would have been invaluable. Mike served proudly on the OIF Board of Directors from 2001 to 2007. Mike was an activist, an artist, a cherished friend, and a wonderful father. He would have been excited about this toolkit and honored to have it dedicated to him.
Sponsored in part by a memorial donation from Minnesota Neonatal Physicians
In addition, the OI Foundation would like to thank Dr. Bonnie Landrum, Dr. Michael Bober, Dr. Ricki Carroll, Dr. Richard Kruse, Dr. Jeanne Franzone, Dr. Joan Marini, Dr. Reid Sutton, Dr. Deborah Krakow, Tina McGreal, Nikki Watson, Deborah Fowler, and Green Room Communications for their assistance in the development of Navigating a New Diagnosis: A Tool Kit for Parents and Medical Professionals. The OI Foundation hopes this resource is helpful to you and your families. Please know that we are here to support the OI community. Questions or concerns about this document can be directed to the OI Foundation at bonelink@oif.org
Toolkit Video Series
In addition to the online tool kit, we have created a video companion piece to answer popular inquiry questions about OI and dispel common misconceptions. This video series features medical experts in the field of OI, pediatrics, and genetics. These videos should not be treated as telemedicine and we encourage you to discuss any questions you may have with your medical care team.
